Rainbow at shoreline

The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Common symptoms and lumping chronic conditions together

In a lecture called "CFS Diagnosis: Are You a Lumper or a Splitter" co-sponsored by the Massachusetts CFIDS/ME & FM Association (MassCFIDS) and the Massachusetts Department of Public Health on April 28, 2012 Dr. Benjamin Natelson, Director of the Pain and Fatigue Center at Beth Israel Medical Center in New York City, presented twenty years of research and work with Chronic Fatigue Syndrome (CFS) patients. Dr. Natelson's wife, Dr. Gudrun Lange, Ph.D., a Clinical Neuropsychologist accompanied Dr. Natelson to Massachusetts, and in a surprise double-header, also spoke about the process of neuropsychological testing for CFS patients.

What's a syndrome?

Dr. Natelson explained that in CFS, as well as such other syndromes as Irritable Bowel Syndrome (IBS), Temporal Mandibular Joint Syndrome (TMJ), Migraine, Depression and Schizophrenia, there are common symptoms that seem similar and therefore, the medical professionals label it a syndrome. A syndrome is a cluster of symptoms that can have multiple causes. "We need to figure out ways to reduce the variability. CFS is the tip of the iceberg" he said. Fatigue can be related to many pain syndromes but whether the fatigue is a result of sleep problems or if the fatigue itself produces pain needs to be sorted out.

Fatigue is the most common symptom in medicine

There are many medical conditions and syndromes that are associated with severe fatigue. These conditions can include Chronic Fatigue Syndrome (CFS), Fibromyalgia (FM), Irritable Bowel Syndrome (IBS), heart failure, Multiple Sclerosis (MS) and Chronic Obstructive Pulmonary Disease (COPD). In fact, fatigue is the most common symptom in medicine, and there are multiple causes, including sleep disorders, infection or any number of other conditions. Dr. Natelson stressed that in CFS there is severe fatigue marked by a substantial decrease in activity.

Dr. Natelson presented statistics to drive his point home. A person has a 9% chance of developing CFS within 6 months after a bad infection, but not necessarily lasting for more than 6 months. About 15% of breast cancer survivors fulfill the criteria for CFS. Fatigue is often the first symptom in Multiple Sclerosis (MS), and many Parkinson's patients are often debilitated by fatigue.

Lumper's approach

The lumper's approach groups all chronic conditions, such as CFS or FM, in which a person has physical symptoms that involve more than one part of the body but seemingly without physical cause, as a somatization disorder. Doctors are inclined to diagnose pain and fatigue related syndromes, which currently have no diagnostic test, as Somatic Amplification, a tendency to psychologically perceive normal sensations as overly intense.

Dr. Natelson feels that Somatic Amplification has a derogatory connotation and should be replaced with Medically Unexplained Symptoms. In fact, the rate of somatic disorder reported in CFS patients depends entirely on whether the cause of the symptoms is interpreted as psychological or physical by the physician who is making the diagnosis.

Notice about names

The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.